Monthly Archives: August 2014

More Heroes than a Comic-Con

You’ve seen me post about Camp Luck on here before:

CampLuck

It stands for Lucky Unlimited Cardiac Kids, and it’s a great program for our heart warriors.  2014 is an amazing year because the hard-working Camp Luck team worked together to develop a new program called Baby Luck, which provided support for heart babies and toddlers (and their families too!).  The kick-off to Baby Luck was an awesome luau on August 2nd and I absolutely wouldn’t WAIT!

When we got there they had food, music, and lots and lots of toys for the kids to play with.  All of my kids jumped right in and had a really great time, especially Nolan:

BabyLuck

He had his lei and his shopping cart and he was good to go!  Even a lot of the heart staff came out to the event, including Nolan’s cardiologist, who said he was happy with Nolan’s walking and our plan to get him off the g-tube.  It’s very touching to see doctors, nurses, and nurse practitioners volunteering their time to support heart families…it’s great to know we’re not alone!

I had a good time chasing kids, wearing balloon hats, eating lots of ice cream, and mingling with other heart parents.  At some point in the day I referred to this meeting as a gathering of superheroes, and that’s so true.  There was a room full of kids with their own battles, and the families that love them…and each and every one of them is a superhero because they’ve fought through things that would put us to shame.  This was a great time to let our kids be kids, which is so very important.  And just as important is the chance to meet other heart parents and support one another.

So a big-time shout out to Camp Luck and the Baby Luck team!  So looking forward to more gatherings, more fun, and more friendship!

If you’re in the Charlotte area, go to the camp luck website (http://www.campluck.com) for more information.  If you’re not in the area, I hope that there’s something just as awesome where your hero can connect with other heroes.  The Avengers got nothin’ on Heart Warriors!

For Those About to Nom: We Salute You

Hey friends: as promised, I would keep you posted on Nolan’s progress with the g-tube wean.  First thing’s first, I have to admit that this is a major challenge, so if you’re thinking about weaning your child off a g-tube, prepare for a marathon…an uphill marathon…an uphill marathon where you’re carrying a boulder….you get the picture.

Nolan started off his feeding journey like a boss: he ate two containers of baby food each day while being supplemented by PediaSure.  Then he continued to do better: he’d slowly get up to 3 containers and we sensed victory on the horizon.  Then Nolan did what Nolan does best: he got stubborn.  Some days he’d fight us tooth and nail when it came time to eat…then other days he’d eat like he’s never seen food in his life.  So there were days he’d eat 2 containers, and one day where he ate over 4 containers.  A lot of times when we sat him down to eat, he’d clamp his mouth shut like a jerk and just shake his head.  Ugh.

To add to it was the struggle to maintain his calorie count so he doesn’t lose a ton of weight during this process.  Weight loss is expected, but you don’t want it to get out of hand so we wanted to get him as close to 1000 calories a day as possible.  This is where things got tricky, especially with the PediaSure: we started off by feeding by mouth while pumping in his formula through the tube.  Problem with that is we didn’t quite know when his belly was full so he would throw up.  Sometimes the PediaSure would fill him up – and he’d know it – and he would stop eating.  We wanted him, then, to associate eating by mouth with being full, not necessarily the g-tube.  So we’d only do tube feeds when he’s asleep for naps and at night.  Otherwise it’s through the mouth.

In the midst of this hard work, it’s cool to see Nolan’s tastes coming to light.  He loves the banana-mixed berry baby food and anything with mango.  One of his favs, though, is this Happy Squeeze Greek Yogurt stuff:

Razzleberry

He tears it up, which was great….until we ran out.  Then we couldn’t remember where we bought it.  We took to the interwebz and found out it’s in lots of places: Target, Food Lion, Harris Teeter, Wal-Mart, etc…we went to SEVERAL of those stores and struck out each time.  We were freaking out: I mean he was eating other stuff, but this was his fav!  We almost had to order some off amazon, but my wife finally found some at Target…and bought 2 boxes of it!

We’re going to keep pushing: we’ve been getting creative with ways to add calories to his diet.  Olive oil, whipping cream, looking into Duocal…whatever it takes.  The goal is to still get him off that stupid g-tube, but admittedly it’s been a frustrating process

Heart Dads and PTSD

Can dads experience PTSD while their child recovers from intense heart surgery?  In short, yes.

You’ve read this blog, and you might be going through it yourself, so I don’t have to tell you that having a heart baby is tough.  You get this diagnosis (if they even find it early), learn all about this CHD, then you’re faced with this grueling 7-hour wait while your 5-pound baby goes through a very serious heart surgery.  Then you see him struggle for many, many weeks with his chest open and a machine doing his breathing.  It becomes your life, and yet somehow your old life still continues outside that hospital room.

You have to go back to work and deal with people and their issues.  Man I remember going back to work…I wasn’t ready.  I was this grizzly bear/Incredible Hulk hybrid just waiting to tear someone’s head off.  It was tough.   I didn’t want to be at work, I wanted to be with my son…and even then I could do NOTHING to make him better.  Just hours of sitting there and praying that he would be ok, that he would get strong and grow up to be whatever he wanted.

There was a time, here and there, that I had trouble sleeping because of bad dreams or bad fears.  There were times I felt like I was about to lose my mind.  The good thing is that Nolan had some REALLY great doctors and nurses on his side, and they did a lot to keep me assured and comfortable.  I had a chaplain I used to work with remind me to count my blessings.  And it worked: Nolan turned the corner and I started to feel a little bit more in control.  There were days leading up to his 2nd surgery where I could feel the worry creep back, but his surgery went well…and even a trip back to the CVICU wasn’t bad because he was in there for less than a day and his recovery overall was quick.

Around the holidays, my wife and I delivered some care packages to CVICU and that’s where a few things came back, it’s amazing.  The smells, the sounds…I started to feel a little uncomfortable and sweaty.  It was a totally weird feeling because I was there to do something good, but I was suddenly reminded of those very long days and nights.  I’ve since been able to go back to CVICU without a problem.

So yes, I do think heart dads can suffer from PTSD: this is the most intense, fearful thing a guy can possibly go through.  I know PTSD is usually associated with war – and that’s true – but it can also show up in so many other instances as well.

This is a REALLY great article about the subject: http://smallbeats.childrensomaha.org/can-parents-experience-ptsd-childs-heart-condition-part-1/  and I wanted to highlight one interesting tidbit:

PTSD Dad

So yes, it happens.  And it’s nothing to be afraid of.  I encourage you to be honest with how you feel about your heart warrior’s process.  It’s part of why I started this blog: it’s a way to share and get those things out.  I encourage you to find a really good support system: family, friends, church, whatever…as long as it’s healthy.  And connect with other heart parents, too…that’s why I’m here!

Nowadays I don’t feel like I did that one day at CVICU.  In fact, I get the opportunity to share those experiences with people as part of my job and I’m thankful for that opportunity.  Yes, sometimes I get bummed that Nolan has HLHS and I just wish he didn’t have it, or I just wish he didn’t have another surgery to go.  But I’m also really thankful he’s with us and that I get to see him walk around, eat some food, be silly, and try to climb on me.  Those things definitely outweigh the bad.

Dear G-Tube: This is Your Eviction Notice

As of writing this entry, Nolan is 19 months old and very soon to be 20 months old.  If you recall from waaaaay back in this blog, he had a G-Tube placed for feeds just before he went home from the Norwood Procedure.  So at the time, Nolan had been in the hospital for almost 2 months…he was SO close to being home, we were exhausted, and we just wanted our family to be whole for the first time since the twins were born.  Speech therapy came into his room and did a half-hearted attempt to get him to drink from a bottle, but no luck (and no duh, he had been intubated for over a month!).  So they went the G-Tube Route and we quickly agreed…whatever it took to get him home.

Fast-forward 17 months and he’s still on the G-Tube…and it sucks.  IT.  SUCKS.  I can’t stand that thing, more for his sake than mine.  I hate that sometimes he steps on it when he tries to stand and it pulls and hurts him.  I hate that sometimes the tube pops open during a feed and covers his bed completely in smelly Pediasure.  And I hate that idea that he just doesn’t eat like his twin brother can, which he wants SO badly to do.  I’ve noticed that lately if I give something to either of his brothers, Nolan will FLIP if I don’t give it to him too.  He goes to speech therapy twice a week and the results are so up-and-down, it’s ridiculous.  Sometimes I can get him to eat 5 bites of baby food…then he’ll eat nothing for 3 weeks.  Then it’ll take him 3 days to eat a pouch of baby food…then he’ll spit up daily for a week.  Ugh, so frustrating!  To make things worse, Nolan’s GI team put in the G-Tube but never once put a plan in place to get him off the G-Tube.  Say what now?

In my last post, I mentioned an internet radio show about CHDs called Heart to Heart with Anna.  During the episode where I was a guest, Anna mentioned a previous show she did about heart kids and G-Tubes.  A few days ago, we had a listen to this episode and our eyes were opened.  It talked about a parent who used a program in Austria called No Tube, and her child was weaned completely off tube feeding in a matter of weeks.  WHAT?!  So we did the research: this program is very in-depth (and expensive) and have a success rate of over 90%.  WOW.  And why don’t we have this in the US?  My wife and I did a ton of research (she did more than I did) into the subject and found parents who used the system or one like it to successfully wean their kids off the tube.  Obviously we can’t afford to fly to Austria and we couldn’t afford the web-based program, so we’re off to try it ourselves.  The key is understanding that tube-feeding keeps kids full…and if you’re full, why eat by mouth, right?  Right.

So last Saturday we started by waking Nolan up and giving him a VERY small tube feed while trying to feed him by mouth.  He had like 2 bites and then refused.  So we turned off the pump and let him play.  Some time went by before we decided to try again.  This time, Nolan TORE up that baby food!  A few hours later, we tried it again and he ate some more.  Then we kept repeating.  While he was eating, we would run the feeding pump, so he wasn’t dehydrated or under-nourished.  By the end of Saturday, Nolan had eaten two entire containers of baby food by mouth!

NolanFeeding

Look at that happy, messy face!  He went to bed with a full tube feed that night and we repeated on Sunday.

On Sunday he did an even better job of eating: he finished 3 whole containers of baby food and even drank some water from a cup!  YES!

So we’re going to spend the next couple weeks working very hard to keep up the feeds by mouth.  It’s hard work and fairly time-consuming…but it’s worth it!  The results don’t lie!  I know he has quite some time to go before we get that G-Tube out, but this is a great step in the right direction.  I will continue periodically documenting his progress here on the blog and I know it’s going to be a HUGE celebration once that G-Tube is out…and that is definitely a reality, as he’s made more progress in a couple days than he has in almost a year.

The truth is that many G.I teams here in the states will put in the G-Tube but don’t have a plan for it to come out.  That’s a shame: it’s left up to families to work hard with the child and therapy teams in order for this to happen.  Nolan’s speech therapist is AWESOME and she has worked very hard to get him to this stage.  Now’s where the real work begins!  I’m so thankful for Nolan’s progress and thankful for the folks in Austria who developed such an amazing program.  In their honor, here’s another Austrian that EVERYONE loves:

ArnoldGTube

HLHS Dad on the Radio!

Radio Grandma Meme

 

Last week I had a really awesome opportunity to share my experiences as a heart dad on a very special internet radio show called Heart to Heart with Anna (http://annamariejaworski.com/).  Anna Jaworski is a heart mom herself and does an INCREDIBLE job of finding weekly topics that can help and educate heart families and healthy families alike.  I’m serious, she covers some great topics, including sports for boys with CHDs, how CHDs affect parents’ relationships, etc.  Really good stuff.  I was honored to participate in the show titled “Working vs Stay at Home Dads.”  You can listen at any time at this link:

http://www.blogtalkradio.com/hearttoheartwithanna/2014/07/29/working-dads-versus-stay-at-home-dad

I’m not going try not to spoil the conversation because I want you to listen to it and the great viewpoints brought by the other dad on the show, Michael.  I will say that I’m really grateful for people like Anna and Michael, who take the time to share their experiences with others.  Once I went back to work in the middle of Nolan’s Norwood recovery, it was very difficult to remain focused, especially since the way ahead seemed to unclear.  It was often during this time, on lunch breaks, I would scour the internet for stories, thoughts, ideas…anything that would give me a sense of hope that everything was going to be a-ok for Nolan.  Fast-forward to now and I get the privilege of writing this blog as a way to help others, and I couldn’t have done it without those heart parents who paved the way.

There’s lots of great resources out there…positive resources, and I encourage you to connect with other heart families.  It’s amazing the amount of support you can get…and hey, I’m always available to help too!  I don’t have it all figured out: I don’t pretend to.  What I can do, however, is continue to be honest and share what happens with us and Nolan.  Hopefully someone will find hope out there just like I did.

To the stay at home heart parents out there: you guys are doing an amazing job.  I know the days often blur together, you feel exhausted, and you feel like you’re accomplishing nothing….but please keep it up.  You get to spend some special time with your little ones and it’s truly a blessing.  Your impact will be seen for years and years.

And for the working parents: you keep it up too.  Keep providing, keep doing the best you can, and remember to shut work off once you get home so your family gets all of you.  I know sometimes it’s hard to miss cardiology appointments and the like because you have work, and sometimes you want to stay home and hold your heart warrior just a little while longer.  Your efforts aren’t in vain, though: you’re working to pay for those life-saving doctor visits, and everything you do, you do to keep your family warm and safe.

Keep it up, heart parents…you’re the best sidekick a heart hero can have!